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Archive for November 2025

Q2 Quick Note #03: Bexicaserin Reduces Seizures in Multiple Types of DEEs

By KCNQ2 Cure | November 18, 2025
KCNQ2 research updates

A phase 1b and 2a clinical trial tested bexicaserin in people with severe epilepsies and found early signs that the medication may help reduce seizure activity. Researchers report that the treatment was generally well tolerated, supporting continued study in future trials.

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Q2 Quick Note #02: Genetic Testing Finds Four People with KCNQ2 Variants in DEE Cohort

By KCNQ2 Cure | November 10, 2025
KCNQ2 research updates

Researchers in Turkey used gene panels and whole exome sequencing to study the causes of developmental and epileptic encephalopathies, identifying KCNQ2 as one of the most frequently involved genes. The findings highlight the importance of early genetic testing for accurate diagnosis and care planning.

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Q2 Quick Note #01: Lived Experiences of Families Affected by KCNQ2-DEE

By KCNQ2 Cure | November 2, 2025
KCNQ2 research updates

A new study involving 53 parents of children with KCNQ2-DEE highlights that communication challenges, cognitive delays, and daily living needs are often more burdensome than seizures. These insights help guide future treatments that focus on quality of life, not just seizure reduction.

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Recent Posts

  • Q2 Quick Note #16: Early EEG Patterns Identified in People With KCNQ2-DEE
  • Update on Opakalim – Kv7 activator
  • Guest Blog – Why We Drove 3 Hours to Donate Samples
  • Q2 Quick Note #15: Rare Epilepsy ICD-10 Codes are Not Used Consistently
  • Q2 Quick Note #14: Genotype-Phenotype Analysis in 84 People with KCNQ2-Related Disorders

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Scotty Sims

Scotty Sims, MEd

Executive Director

Before her career as a crisis therapist, where she provided support and assessment to children and adults with severe and persistent mental illness, Scotty served as a forensic interviewer, trained to work with children who were victims of sexual abuse for multidisciplinary teams and the court system. Drawn to helping others, she found purpose in roles that allowed her to support people facing significant challenges. After her daughter was born and diagnosed with KCNQ2-DEE, Scotty identified a lack of support systems and resources for caregivers of those with KCNQ2-related disorders. This led her to create the international KCNQ2 caregiver support group. Through this group, she met other families who shared a vision for support and advocacy, leading to the first KCNQ2 Summit in Colorado, which brought together families, clinicians, researchers, and industry stakeholders. Recognizing the need for ongoing resources and research funding, Scotty co-founded the KCNQ2 Cure Alliance. Scotty lives in Colorado with her husband and two children.

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